With a background in special education, Veronica had wanted to take care of a child with special needs, and she was quickly matched with Elena, who has cerebral palsy. When Veronica married, she trained her sister Giselle to take her place as Elena’s carer, but still saw her about once a month. As Elena’s parents aged, Elena was placed in a nursing home.
Veronica and her then-husband Carlos had two children of their own and then decided to adopt a young child with special needs. In 2003, they were blessed with Bianca, a two-year-old child from Romania with hearing impairment, a learning disability, and institutional autism. Several years later, when Veronica was visiting Elena at the nursing home, she realized that Elena was not thriving. After speaking with Elena’s parents, Veronica received Elena’s custody and, with Carlos’ consent, brought Elena to their home to take care of her with the rest of her children.
Although Carlos and Veronica divorced several years ago, they continue to share some caregiving responsibilities. Veronica’s caregiving duties are primarily focused on Elena and Bianca. Elena needs assistance around the clock with high touch activities of daily living, including bathing, eating, and exercising, and Bianca requires speech therapy and help with her learning disability.
Veronica’s future for Bianca and Elena depends on her other children. It is understood that her daughters, Camille and Carla, will take care of Bianca and Elena when Veronica and Carlos are gone. Veronica and Carlos largely attribute this to their Hispanic heritage and the understanding that family takes care of one another. “Neither Carla nor Camille will even consider dating someone who will not agree to include Bianca and Elena as parts of their lives, ”say Veronica and Carlos.
Veronica has recently remarried and says that the pandemic has not been easy on her or her family. Before the pandemic, Veronica had several companions who helped her with her caregiving duties but has had to let go of all but one. The risk of Elena getting Covid-19 is very high, and a terrifying thought considering that she is nonverbal and would not be able to express her needs in a hospital setting without Veronica there. Veronica has to spend all day with Elena, which takes attention away from Bianca, who also needs special care.
The one good thing Veronica and Carlos say that the pandemic has brought about is a structure and rhythm for their family, allowing them time for some activities they did not have in the past. For example, every weekend, Carlos gives a three-hour cooking lesson to Bianca via Zoom, which is a success as a social activity. “Caregiving doesn’t stop regardless of the pandemic,” says Carlos. “My role is to give them emotional and other support in any way I can, in the little things.” In addition to the cooking lessons, Carlos provides support with some grocery shopping, keeping Bianca company, and in any way he can to support the family emotionally.
Veronica often finds herself stressed and feeling depressed. Veronica and her spouse have little energy to enjoy each other’s company at the end of the day. They are stuck in the house 24/7 because they cannot be exposed to Covid-19. She hopes that the pandemic will come to an end soon and that life will become normal once again.